“Patients are a multidisciplinary wealth of lived experiences and shared goals”

I heard this quote recently at a lecture. “Patients are a multidisciplinary wealth of lived experiences and shared goals” and it really struck me. How can we as patients be seen as a valuable part of the process?

I should back up. I recently had one of those encounters. I called my doctor’s office because I had been dealing with some returning symptoms and a modest change in asthma control. I admit that it wasn’t anything too urgent but since I have been generally so well controlled and I am so closely monitored, I did give my doctor’s office a heads up on my status change, in hopes that this could be addressed at my upcoming appointment. I knew that this could be a bit of a challenge because my appointment was going to be conducted by an RT and I may or may not be able to see ether doctor. This is generally not a concern as they usually communicate any issues between each other. In this particular circumstance, there was a bit of a “Lost in translation” moment. I wasn’t 100% sure if there was a miscommunication or a breakdown in relay of the message but I felt like my concerns were not heard. It has been quite a while since I have had this experience. I pride myself in having built a good relationship with my doctors.

Assessing the communication breakdown about my asthma assessment

I had to take a step back and look at the situation as whole.  I made myself a list.

  • Did I use the correct communication pathway? It is important to know who the gate keepers are or how your doctor prefers to communicate about changes in your health.  Depending on the pathways, it will dictate if you need to make an appointment, or if you should communicate with an RT, assistant, nurse, portal, email etc.
  • Was my expectation realistic? This particular situation wasn’t urgent, but what was I expecting? Hmmm… this is really good question. I may have had slightly unrealistic expectations, however, I felt it was important to communicate my symptoms and I had hoped that since I was considered a “partner” in my care, that the dialogue would be open to discussing those. What I realized is that what I considered important “may” have not have been considered as important or was considered missing validation for my doctor. I discovered that because the doctor needed data to support my concerns, that it may have been better to have addressed this concern after a measurement had been taken or request spirometry, etc. Lesson learned!
  • What was my goal for communicating with my doctor’s office? This is an important step. My goal was to get clarity on my symptoms changes and to have that information communicated back. Bingo! This was not a shared goal and I failed to communicate that I needed some response back from my doctor (honestly,  because I was using another person to communicate through, I needed to be even clearer with my expectations.

Lesson learned: We need to actively make our place as partners in our own care

I learned a lot of lessons from this experience. That, I need to revisit that I am a “partner” in my care. That, I need to ensure I have done my due diligence in communicating appropriately and respectfully but that my experiences are important and valid. This meant that, I needed to take a look at my own data and make sure that in dealing with this particular doctor that I had qualitative data alongside my concerns. This is an important communication step with this particular physician. However, it is also important for patients to note that that we have to present our experiences as valuable and be willing to back them up and why they are IMPORTANT to our care and working toward shared goals.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Asthma.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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